Tom Kindlon

Patient Leader

I have Myalgic Encephalomyelitis (M.E.)* since February 1989, when I was just 16. I wasn't diagnosed till autumn 1994 by which time I was severely affected. Although I am not as ill as I was for the first few months, when I was basically bedbound, only able to read and understand cartoons, I remain severely affected 19 years on, only leaving the home for important appointments or to go to our holiday home for the summer. I blame the late diagnosis, and following advice to exercise, for the severity of my illness as in the early years I was only mildly affected (able to study full-time, once I cut out most extracurricular activities). After being diagnosed for over a year, I realised there was a good chance I was going to be stuck being quite ill and disabled for a long period, possibly indefinitely, a prospect that wasn't appealing. Moreover, I realised that there wasn't a huge effort to research the illness well; it wasn't on the radar the way many other conditions were. I have been busy for the last 18 years working away as a (voluntary) ME activist. Much of what mum and I concentrated on in the early years was raising awareness and understanding in Ireland. Mum did over one hundred TV and radio interviews and I have done a few dozens and been featured in most of the national newspapers in Ireland. We have also helped arrange for around 120 Irish families affected with ME to tell their story over the years. A lot more people are diagnosed here now and attitudes have improved. In the last decade, my concentration levels have improved a lot and allowed me to read a lot of research papers in the field. I realised a lot of rubbish was going unchallenged and the pool of people who were trying to respond ever was small, so have spent quite a bit of time responding to papers: I've had 15 letters published in various medical journals along with over 100 e-letters. My proudest achievement was the publication of my paper, "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" at the end of 2011. I had previously been quite academically able but things are more difficult now with M.E. so it took a lot of work and sacrifice over more around 15 months. I still live at home with my parents who take care of most of the practical stuff, which frees me up to use the energy I have on ME matters. I follow ME news closely and try to help the ME cause, in Ireland and internationally, as best I can. Twitter and other outlets allows me to share what I find to a wider audience. I believe there is power in numbers and together we can make a difference; conversely, I feel that if I and others don't try, we will be ignored and fobbed off indefinitely with rehabilitative therapies like graded exercise therapy and cognitive behaviour therapy based on scheduling increased activity. *Perhaps better known in some countries as "Chronic Fatigue Syndrome" (CFS), although some definitions for CFS are overly broad.

Finalist

Lifetime Achievement

Over the years Tom has steadily provided patients over the world with actual information about Myalgic Encephalomyelitis (and Chronic Fatigue Syndrome) over many years.  — Frank

Although he suffers from severe ME, Tom has worked tirelessly for many years raising awareness of ME, and analysing research and trials.  — Jayne

Over the years Tom has kept thousands of patients over the world up-to-date about research into and advocacy for Myalgic Encephalomyelitis (and Chronic Fatigue Syndrome).  — Frank

Past Awards Participation

Third Annual Health Activist Awards

Nominations

Best in Show: Facebook Health Activist Hero

Finalist

Best in Show: Twitter

Fifth Annual Health Activist Awards

Finalist

Best in Show: Twitter

Sixth Annual WEGO Health Awards

Nominations

Best in Show: Community Best Kept Secret

Finalist

Best in Show: Twitter

Fourth Annual Health Activist Awards

Nominations

Health Activist Hero
Tom Kindlon

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